Sunday, November 8, 2009

Life's Unfair: The teen years of growing-up Celiac

I hate being Celiac!  It’s not fair!  I am the only one in the whole world that is cursed!

Nate is melodramatic.  Slightly.  Well, slightly, on his good days.  Very literal, logical, academic, and very melodramatic, that’s our Nate.  As the parent-child teacher once told me, Nate is all emotion and energy.  

Life is not fair.  From the Old Testament, we know Job had his troubles.  But no pre-teen wants to hear about Job losing his house, wife, and kids.  Showing up at youth group and finding out there is a surprise pizza party, and no one thought to about a gluten free pizza; some nights that’s the end of the world for Nate.  Spending a half hour making a new cookie recipe, only to taste it and realize that sand has a better consistency; that’s worthy of declaring that Nate’s dying of hunger.

Everyone has their cross to bear.  Most of the time we can’t see what each other carries.  I’ve been gently talking Nate through the emotional melt downs through the years, and we have often ended up with a litany of how unfair life has been to others, the crosses that others bear that we can only barely see.   

• Nate’s cousin Francis had open heart surgery as a toddler, huge cross for her early life.  As a toddler, she was not growing.  Although the two were the same age, Francis, was nearly six inches smaller.

 • Nate’s best friend, Sebastian, has exercise induced asthma, and he is a star athlete for all the CYO sports, plans to go to the big Catholic high school and on to college with a scholarship.  Yet, he can’t run four blocks without his inhaler.

• Steven’s father has been seriously ill, started back to work and the economy crashed.  There is no money for anything extra, and won’t be for years to come.  Steven is a very accomplished pianist at the age of thirteen, and the family cannot afford a piano.  Daily, Steven walks to his church to practice.

• Edward's mom died when he was six.  Edward and Nate studied ballet together for several years.  At the funeral, Edward came up to Nate and said, “I am so sad, I don’t think I will ever dance again.”

•  Grandma has cancer and is also Celiac.  Grandma was not following her gluten free diet, and during her initial tests for cancer, her liver function levels were completely off.  Upon discussion with the doctor, she had to admit that she was not being careful, which had caused the body to react.

•  Nate’s little sister seems to have nothing ever go wrong for her.  (Well, except that she is allergic to seafood, milk, pork, cats . . . )

And then there is my litany.

  • Gluten free foods are so much more expensive.

  • Why won’t the soup supper cooks bring in the list of ingredients.  I keep asking and every week, I have no idea what is in the soups.  I get tired of bringing our own food to every church parish community event.

  • I get so tired of restocking our gluten free emergency box.  

  • It takes so much time cooking two versions of the same recipee when family and friends are over.  Why won’t they just eat our gluten free foods.

  • It is hard to say, “Sorry Nate, you can’t eat this either.”

I know that it is really hard to feel different everyday.  To Nate, there are times when it feels like he is being singled out or picked on, everyday and everywhere we go.  The closest comparison we have been able to talk through, has been friends with diabetes.  Like Celiac, everything seems to revolve around food; ingredients, food labels, getting enough food, eating a right balance of food, finding enough food when traveling or away from home, teaching others about the foods Nate can eat.  

Talking to these other moms, it is hard not to say, “Get over it, get on with life!”  And, it is only when dropping the mask that we can really say how scared we too were before the diagnosis.  How frustrating it can be.  How green the grass looks for everyone else. 

At the same time, often when supporting each other, there reaches a point when thanksgiving starts to come forward.  

•  I am really thankful we had an early diagnosis.

•  I am really thankful for how supportive my entire family has been for family gatherings and meals by remembering to call or by bringing a surprise treat.

•  I really appreciate the youth group leaders and their willingness to learn and include us in the meal choices.

•  We have been blessed to have several grocery stores that carry lots of choices of gluten free foods.

•  I am so thankful that my husband appreciates the extra work that it takes for food preparation and he teaches Nate to be grateful.  

•  I am so thankful that Nate lives in a time that he can receive a low-gluten host.

I know there are days that Nate would really like to wake up and go through the day, not thinking about his gluten free diet.  My attitude can influence Nate’s feelings about being celiac; I am an example and his support during his frustrating moments.  And, although  I don’t live a life any bit like Job’s, by reading through his book, I can find support in looking for the places to be thankful rather than bitter.

Wednesday, November 4, 2009

Feast Day of St. Charles Borromeo, November 4th (reprint)

"Hey Mom!  We're suppose to choose a saint for confirmation.  Sebastian's saint is known for being the saint of athletes."

Sebastian is the natural athlete every child wishes to become.  A triple threat, football-basketball-baseball; the perfect all-around athlete that every athletic director waits for.

"Wouldn't it be my luck if St. Charles Borromeo was the saint of stomach ailments?"

Nate's and his saint must have chosen each other.  Rick and I, the parents of Nate, chose Charles as his middle name in honor of Rick's father.  Our Catholic friend in Germany congratulated us upon Nate's birth and asked if we had chosen the middle name, Charles, to honor the patron saint of Nate's birth date.   We had no idea of the connection, to us, it was a family name.  Nate Charles was born on his feast day, so through the years we honored the three Charles on November 4th; grandfather, grandson, and patron Saint Charles Borromeo.

At the beginning of confirmation, Nate was undecided as to whether to formally take Charles as his patron saint, or to choose another saint.  His confirmation friends were all researching their saints, coming to class with patron saints of music, athletics, or specific virtues.  Nate's confirmation instructor believed the coincidence was divinely ordained and encouraged Nate to do a little research.  Little did any of us really know.

Who is Saint Charles Borromeo?  

Saint Charles Borromeo was a confessor, someone who died a natural death.  Born October 2nd, 1538, Charles was a lawyer and then appointed a cardinal of Milan.  He is well known for having spent his family's wealth building colleges, universities, and seminaries.  St. Charles was a key supporter of reconvening the council of Trent in 1562.  He was also a radical reformer of the clergy, and created the Confraternity of Christian doctrine for religious instruction of children.  During his life, St. Charles worked to alleviate the suffering of the poor and sick, even walking barefoot three times around the city in his cardinal's robes with a halter as a sacrifice while he offered the Sacraments to the dying.  St. Charles Borromeo died November 3-4th, 1584. and

When we came across the list of patron saints, Nate knew St. Charles was meant for him as
Saint Charles Borromeo is the patron saint of clergy, intellectuals, colic, stomach trouble and ulcers.  Maybe not listed specifically as the Saint of Celiac's, but Nate's earlier wonderings of patrons of stomach ailments was clearly more than intuition.

So, all these years, we have had the perfect patron saint watching over Nate.

Prayer of St. Charles Borromeo

Almighty God, you have generously made known to human beings
the mysteries of your life through Jesus Christ your Son in the Holy Spirit.
Enlighten my mind to know these mysteries which your Church treasures and teaches.
Move my heart to love them and my will to live in accord with them.
Give me the ability to teach this Faith to others without pride, without ostentation, and without personal gain.
Let me realize that I am simply your instrument for bringing others
to the knowledge of the wonderful things you have done for all your creatures.
Help me to be faithful to this task that you have entrusted to me.